Today’s blog is written by a long-time friend of the AKU Society Jess Barnes. Jess’ son was diagnosed with AKU six years ago.

When I found out that the AKU Society needed support in funding the first-ever paediatric study into alkaptonuria, I knew I needed to help. So, on Christmas Day I took the plunge and started a 12 Days of Christmas sea swimming challenge.

Each morning, I headed to Brighton beach, stripped off and much to the bemusement of onlookers, headed into the sea. I wasn’t alone in my watery endeavours, as I was joined by the Salty Seabirds, a local sea swimming group. The support I received from this fabulous salty flock was incredible, and whatever the weather, more and more swimmers joined the fun throughout the challenge. I also recruited friends to come and take a dip and two very close friends even joined me for the full 12 days.

Some of the swimmers that joined me hadn’t been in the sea for years, let alone in the winter, in just a swimming costume. Surrounded by experienced sea swimmers, these amazing and very inspiring women waded in. The thing about swimming in the winter is that it is very, very chilly (obviously) and regardless of how many times you’ve been in, that initial blast of cold water is a shock to the system. So, each morning, the sea was awash with colour and accompanied by lots of shrieking and even louder laughter.

The support I have received from family, friends, friends of friends, the AKU community and members of the public has been absolutely phenomenal, with donations coming in from around the world.

Before I had even started the challenge, I received a very large donation from a family in the US. They had heard about my fundraising efforts and the SOFIA paediatric study from a post I had shared with the Alkaptonuria group on Facebook and wanted to show their support. I made contact with Eric Ermie and he told me about his Dad. Peter had AKU and was a keen advocate of research into the disease. He willingly took part in studies to help doctors and researchers understand more about this awful disease, knowing that he himself, couldn’t be helped. Peter did it to help future generations, especially children.

Thanks to Peter and people like him, AKU is now treatable! The next step is to find out more about the effects of AKU in children and when treatment should start. This could be a game changer for families just like ours, that have children with the disease. The AKU Society has already secured £70,000 but needs £10,000 to enable the study to get underway. My JustGiving page is still open and if you would like to help fund this vital paediatric study, you can donate to the link below.

Sadly, Peter passed away in 2013, the same year our son was diagnosed with Alkaptonuria. With the blessing of his family, I dedicated this challenge in memory of their dear Dad.

I also remembered our dear friend, Ann Kerrigan, another great champion within the AKU community, who is greatly missed.

Thank you to all of those that have supported us so far. We are eternally grateful.

We want to say a huge thank you to Jess for her fantastic fundraising over Christmas. Another thank you goes to all the kind souls who helped her raise the enormous amount of money! Without people like Jess, we wouldn’t be able to do the work we do to help AKU patients and ultimately cure the disease.

If you would like to get involved with fundraising and would like some help from us, please contact our Fundraising Officer Juliet by emailing and head to the get involved page of the website.